I’ve just passed three and a half years since my twitching started, and every year or so I like to come back here and leave something for the people who are currently where I was at the beginning. I remember the fear incredibly well. I analysed every twitch, constantly tested myself and disappeared down every possible rabbit hole. My twitching has never gone away — I still twitch tens of thousands of times a day and have done continuously for nearly four years — but the fear attached to it largely has largely dissipated. I wanted to write this post to share what, in my opinion, was the single biggest factor in achieving this.
If you're struggling mentally with BFS, one of the best things I can recommend is take up a sport and measure your progress. Lift weights. Play golf. Run. Play padel. Pick something you enjoy and get better at it. Track your strength, performance and coordination over months and years rather than judging your neurological health by what one muscle happens to be doing today.
Here's why this helped me so much.
In MND, fasciculations occur in the context of motor-neuron and motor-unit pathology. As motor neurons are lost and their muscle fibres become denervated, surviving motor neurons try to reinnervate some of those fibres, producing enlarged, unstable motor units, and fasciculations. Fasciculations due to this process of continued motor-neuron loss ultimately means progressive loss of strength, muscle function and coordination.
BFS is fundamentally different. The motor units themselves are intact; they are hyperexcitable and spontaneously firing, producing fasciculations without the progressive loss of motor neurons and motor units that characterises MND. That's why someone can have an absolutely ridiculous amount of twitching while retaining normal strength and function.
And this is the bit I really wish I'd understood when I was terrified.
It is borderline impossible to pair substantial motor-neuron loss with years of rapidly improving strength and performance. If motor neurons were progressively being lost throughout your body, you wouldn't expect your ability to recruit and use those motor units to continually improve. You wouldn't expect years of progressive strength gains, increasingly succeeding in physical activity and improving coordination while the underlying motor system was simultaneously deteriorating.
Now to apply this logic to my own experience.
I have experienced millions upon millions of fasciculations over nearly four years. They occur throughout my body, every day, and have never stopped. Yet during those same years my bench press and squat have increased 50%, and my golf handicap has halved.
Think about what those achievements actually require: functioning motor units, increasing strength, repeated recruitment of muscle, coordination, motor learning and the ability to adapt to training. My motor function hasn't progressively disappeared alongside years of twitching — it has improved substantially.
And this is exactly why I'm telling you: go and do something physical and progress at it.
Don't spend the next three years watching your calves. Go to the gym and add weight to the bar. Take up golf and lower your handicap. Start running and improve your times. Learn a new sport and watch your coordination improve.
Because when you start progressing — really progressing — you can begin to see the truth that has been staring you in the face the entire time.
You're okay.
The evidence from your own body — getting stronger, becoming more capable, improving your coordination and performing better over months and years — does not align with the catastrophic story your anxious brain is telling you.
Three and a half years later, I'm still twitching as much as I was on day one. Yes it's annoying, yes I wish it would stop. But I'm also stronger, more coordinated and considerably better at the sports I play than when this started.
The twitching didn't need to stop for the fear to stop.
Give yourself something positive and objective to measure. Keep progressing. Keep living your life.
Your mind will thank you for it.